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Graft-versus-host disease (GvHD)
Bronchiolitis Obliterans
Acute Myeloid Leukemia
Antibody-mediated rejection

Embracing the Gift of Life: A Journey from Childhood Cancer to Double Transplant Recipient

I started first experiencing symptoms at age 1 with my cancer diagnosis. At age 3 with my Bronchiolitis Obliterans/chronic GVHD diagnosis.

Hypermobile Ehlers-Danlos Syndrome (hEDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Common Variable Immunodeficiency (CVID)
Small Fiber Neuropathy (SFN)

Fighting From Day One: A Lifetime of Health Challenges

"I have been sick since I was a baby. I suffered from two severe kidney infections as an infant, along with seizures for the first five years of my life..."

Cauda Equina Syndrome
Spinal Cord Injury

Whispers of Courage: Redefining Independence in the Face of Challenges

"I had a slow-onset spinal cord injury. I had sciatic pain for 5 months before I couldn’t walk at all. Then I needed emergency surgery."

Postural Orthostatic Tachycardia Syndrome (POTS)
Mast Cell Activation Syndrome (MCAS)
Chronic Gastritis

Juggling My Health with POTS, MCAS, Chronic Gastritis, and Endometriosis

“I first noticed something was wrong with my health when I almost fainted after having a hot shower before work. My parents had to call the ambulance, but my observations came out fine…”

Hypermobile Ehlers-Danlos Syndrome (hEDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Chronic Fatigue

Finding Hope Amidst the Challenges: My Battle with hEDS, POTS, and Multiple Chronic Conditions

“I was born chronically ill, so I have always been sick..."

Spinal Muscular Atrophy

Shaping Change Through Challenges: My Life with Spinal Muscular Atrophy Type 3

“I had symptoms as a child, but they were never picked up. I had knee issues so they always said that nothing could be done until I was 18 and that I would need surgery. This prevented any diagnosis of some of the more pressing issues…”

Sturge-Weber Syndrome
Port-Wine Stain Birthmarks

Through the Eyes of Sturge-Weber Syndrome, Port-Wine Stains, and Glaucoma

“The laser treatment was especially challenging as for the first few weeks my face was very sore, swollen, and purple, which did cause people to stare even more than they usually do, as I didn’t look “normal” …”

Severe Aplastic Anemia

My Story of Navigating the Uncharted Territory of Severe Aplastic Anemia

“A lot of it was difficult - the chemotherapy and radiation, the weekly eye injections, the bone marrow biopsies, suffering unexpected seizures as a side effect of my medication, and much more…”

Sickle Cell Disease

My Silent Struggles: Living with Sickle Cell Disease

“Sickle cell is a beast. Getting up every day is truly a fight in itself. You can be doing everything right, and yet the pain can still come and wreak havoc that is excruciating and indescribable...”

Ankylosing Spondylitis

A Queer Guide to Chronic Illness: My Rollercoaster Journey with Chronic Pain, Fibroids, Hysterectomy, and More

“I cried. I literally was just overwhelmed that someone finally told me something was up and that they had found something…”

Spinal AVM
Spinal Arteriovenous Malformation (AVM)

Embracing the New Normal: My Life with Spinal AVM

“It all happened so fast. The whole experience felt surreal yet frightening with the battery of tests I had to undergo...”

Ankylosing Spondylitis
Hashimoto's Disease

Unveiling the Invisible: My Journey with Ankylosing Spondylitis and Hashimoto's Disease

“I went to multiple physicians. In the beginning, all the doctors told me it was "all in my head" and that nothing was wrong with me. As a physician myself, it was crushing that none of the doctors took my symptoms seriously initially…”

Functional neurological disorder
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Small fiber polyneuropathy

Navigating the Uncharted: My Journey with Nerve-related Diagnoses

“My condition has significantly impacted my daily life. I have transitioned from being someone who was mostly at home to someone who has spent almost a year hospitalized...”

Ehlers-Danlos Syndrome (EDS)
Primary Immune Deficiency
Selective Antibody Deficiency
and more...

Beyond Ehlers-Danlos Syndrome: Life with Multiple Co-occurring Disorders

"It took 17 years to get a diagnosis of Ehlers-Danlos Syndrome. From there, more and more diagnoses have and continue to roll in..."

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